Dementia Survival Kit

Surviving Dementia

Tips on handling care when caregiving.

Below is a list (not exhaustive) of what to keep in mind when handling dementia. This is based on my experiences in the US (between CA and TX). Note, dementia can take many forms and play out in a number of ways and what I’ve listed can be used for many caregiving situations. Take what works and leave the rest.

Rule of thumb = simplify what you can

CAREGIVING SUPPORT

You

Put yourself first:

• Take care of yourself because you have to survive this.
• Make decisions that you know will take care of you while doing what is best to take care of the person in need (even when they don’t want it).
• Recognize the power dynamic has changed.
• Put your charge second and let everyone else take care of themselves (they are more than capable).

Trust yourself:

• If you think something should happen, trust your instincts.
• Everyone has opinions. Take what works and leave what doesn’t because none of them are having your specific experience. That is true for this post too. Most of the those who give advice are not experiencing the same things you are.

Survive:

• When going through this, you may feel depressed (completely detached and numb to the world).
• Keep showing up and engaging no matter how much of a ghost you feel.
• Spend time with people who accept this.
• Eventually life will regain color.
• You may feel guilty about all of it especially early on. Fight this.
• Stop being hard on yourself about what you aren’t doing, and do not give time to others who trigger negative emotions like this.
• Get a therapist, support group and/or group of friends you can turn to when you need.
• Break any perfectionist tendencies and stop trying to do it all.

Be patient:

• Understand that your charge is not in control of themselves like they used to be and patience and understanding will help you get through.
• You are not a bad person for being angry at the situation and wishing the person was not your problem anymore.
• Crucial point is that you do not take any anger you have about the situation out on the person who is unable to care for themselves. If you find yourself doing this then step away.

Find distractions:

• I worked a lot.
• Friends got me out.
• I binged watched TV in between the insanity.
• Use what you need to keep you distracted.

Take breaks:

• Even if you only take a nap.
• When you find yourself losing patience, take a break.
• When you are angry and its coming out, take a break.
• When you start crying, take a break
• When you are numb and unable to react, take a break.
• Do things that are fun no matter how guilty or depressed you feel. DO NOT put off doing fun things until… do it in the now.
• Live your life & live in the moment.

Charge | Care Receiver

• Stop forcing them into your reality. Only do this when its to keep them safe or protect others from them. My mom left her Christmas tree up most of the last year she was in her house, and it made her as well as many others who visited the house happy. There was no reason to take it down.
• There are a range of ways they can be reacting from they are fully aware to they don’t know/refuse to believe anything is wrong but are hiding it.
• Strong emotional reactions can lock in memories to last longer. My mom was so overjoyed by a friend who called her that she remembered for a couple days vs. she hates all doctors since one told her she would lose her ability to drive.
• Anxiety can also cause them to not lock in memories. Over 10 minutes my mom searched for this piece of jewelry 20 times no matter how many times I told her I was holding it for her.
• Eating habits can change and research shows there may be a link between gut bacteria and the disease. Like only eating sugar and drinking Ensure.
• Be careful of learned behavior patterns (perseverating), especially ones you don’t want to stick like giving away money, flooding something they do over and over again, going to the ATM multiple times a day.
• Figure out what they like to do that is positive and try to make that something they do regularly like playing games, coloring, dancing, and singing.
• Understand it is common for them to find large crowds overwhelming and stressful. This can include large family gatherings. Allow them to have smaller engagements with people.
• They are still a person and take time to listen to what they are saying. Don’t disregard everything they say as meaningless. They deserve respect and dignity and they can share pearls of wisdom if you listen. My mom is always telling me how important it is to be kind to everyone.

Example Signs of a Problem:

• Notes everywhere, things they can’t handle pilling up
• Rotting food
• Piles of unopened mail shoved into drawers and closets
• Repeating themselves and things they do many times as if they haven’t and within a short span of time
• Mixing up names and dates
• Changes in mood such as increased anxiety, paranoia or anger

Support Network

Find your go to people who will support you:

• They will have your back and make you stronger through this.
• They ask how to help.
• They pitch in and do things they know will be valuable.
• They limit or keep out judgements.
• They don’t attack you when the situation is at its lowest point.
• You do not have to take care of them as they go through this.
• Accept the help offered and understand people show up in their own way.
• Be careful about the expectations you put on the group because people are going to help not necessarily in the way you expect.
• Find help with family, friends, women’s network, wholistic senior relocation services, estate sales, relators, agencies for caregiving, online apps and websites.

Independent Caregivers

• The US law requires treating someone as an employee if you hire them as an independent caregiver. Check current legal definitions to confirm how to handle the paperwork and pay.
• People try to pay under the table and I’m not saying you should do this, only sharing what I’ve heard.
• You can use organizations to handle payroll, taxes and relevant paperwork (e.g. W-4, with holding federal income tax). I used HomePay through Care.com.
• They are potentially more flexible in schedules. I had someone who could be there last minute and wanted all the extra hours.
• They may be able to handle meds directly

Caregiving Agencies

• Handles all payroll, taxes, paperwork, scheduling and invoices you on a regular basis.
• Requires a couple days or more notice to schedule or change the schedule if you request the change.
• Has more resources to fill in for last minute caregiver changes.
• They typically cannot handle meds directly.
• Check what level of care they can provide as the dementia progresses (e.g. entertainment, feeding, dressing, showering).
• Ask how they train caregivers to handle patients with dementia (e.g. able to redirect and handle symptoms like confusion, frustration and fear).
• Ask how they respect the person they take care of.
• Find an agency that allows you to communicate directly with assigned caregivers. This is important when you are remote and trying to stay up to date on your charges care and coordinate.
• They do an initial in-home assessment where a care coordinator comes to the home to meet with you and your charge. There is a walk through to assess the safety of the space and chat with the person who needs care to understand her/his needs and how to best match them.

Friends & Family Caregivers

• They are probably not trained on handling dementia and will have different reactions to the changes in your charge.
• Give them specific tasks you need help with and accept what they can or cannot do.
• Friends and family: understand that the main caregiver doesn’t always know what they need help with and if you have ideas, then pitch in.
• Share the caregiving schedule to give them an option to help.
• Be careful that they do not add additional stress on the person they are caring for or the caregivers you hired.

Other

• There are non-profits and other organizations that can help provide breaks if you are handling care in-home.
• Checkout adult day care programs.
• Look into government support programs like subsidized senior housing.
• Check if your company has an employee assistance program (EAP). They may be able to do research on facilities, lawyers, independent caregivers, realtors, all the things you need help with). It is very valuable to have someone else who can help do the research.

Senior Living Facilities and Homes

• Options can range from large facilities to smaller board and care (group home) places.
• Some facilities cater to different stages of aging from more independent where you have access to activities and community to assisted living where meals and some level of care is provided to locked down memory care that is specialized to handle dementia. And current residents get priority to move into different areas of the facility if they need more care.
• Location, location, location. Move the person as close to you as possible. This will make your life easier if you are the primary caregiver.
• No place is perfect.
• Talk to people running the place that are not just the sales people and to other family members that have someone there to see what their experience is with the place.
• The cost can be high and is not covered by Medicare. Larger facilities are more expensive than smaller group homes.
• There is usually a base fee and there are additional fees depending on the how much more care is needed for the resident. It goes up as they need more help. Ask for a breakdown of all fees.
• Before a dementia diagnosis, look into setting up long-term care insurance. It can be hard to get but still exists out there.
• Be careful about calling A Place for Mom or thinking you are calling a facility that is directing you to their system. Ask the person to verify what company they are with before you give any information about yourself and if they are not the senior living place then decide if you want to use them or locate the direct facility number. I’ve heard once you are in A Place for Mom’s systems, they claim a percentage finders fee on any home you go to that is in their database whether you use them to find the place or not.
• Other services and individuals exist to help you find a facility or home and other support services. Find out what affiliations they have with facilities. Some of these groups can be helpful with streamlining the search.
• Give an alias name and number when calling a facility directly to get information the first time to help cut down on sales follow-up calls.
• It takes time to adjust to the new place so give it time (e.g. 2 weeks minimum for us).
• Stay confident and positive every time you leave them like you are leaving a child at school for the first time.
• If you are unable to be there for an emergency then have an independent caregiver agency ready to call last minute to show up and be there if needed (e.g. hospital visits).
• The process can include an application, deposit, in-home assessment about a week before moving in and getting a local doctor. Some require proof of finances that can cover up to 10 years of costs including inflation.
• Some facilities have a waitlist and you may even have to pay to be on the waitlist. Check on refunds.
• When you’ve picked a place and signed the paperwork, use the DPOA and sign as your charge and then put yourself only as the attorney in fact or agent. Make sure your charge holds all financial responsibility for the facility. No matter what you hear, you are legally able to do that and should do that to protect yourself.
• Setup a local doctor if you don’t have one as a point of contact for the facility to handle all meds and get approval for pain meds (e.g. Advil) when you move the person in.
• Most residents ask to go home. Its a common thing you will see in all places.

Assisted Living

• Handles meals, meds, activities and cleaning apartments but requires residents to be pretty independent.
• In California, residents labeled a wandering risk on the Physician’s Report for Residential Care Facilities for the Elderly (RCFE) form 602 can end up requiring 24/7 independent caregiver and to wear a wander guard or move to a locked area of the facility.

Memory Care

• Dementia is a memory issue and memory care is designed to help those with dementia.
• Typically, residents share rooms which is not as bad as it sounds. My mom was getting nervous being on her own so she found comfort in the roommate.
• Caregivers in memory care are focused on helping residents with dementia.
• If the resident is violent or an escape artist you will need full time independent caregivers separate from the facility to help.
• When assessing, ask friends and family of existing residents about their experience with the place.
• Put things to keep in the room that make your charge happy and help with memories like photos and favorite items.
• Give the resident things to engage her/his brain like coloring books and colors, books to read, puzzles and games.
• Whatever you let your charge keep in her/his room, recognize it is fair game to disappear or be broken. It could be them, other residents or something unrelated. Its best to put things in the room that have little consequence on what happens to it.
• Label clothing and things with your charge’s name.
• Residents cannot have a cell phone in memory care especially because they do not want the person calling 911.

PAPERWORK & ADMINISTRATIVE DETAILS

Typical information needed to handle paperwork and calls

• Social security number
• Birthdate
• Account numbers
• Personal answers for questions

DPOA

• Set-up a durable power of attorney because non-durable POA expires if the person becomes incapacitated.
• Give full authority to the agent(s) unless there is a reason you can’t and if so I recommend finding a different agent.
• Include more than one person on the DPOA because there is no changing after incapacitation.
• Even with DPOA, it’s still a pain in the ass to get all the paperwork done because of system inefficiencies, human issues and security concerns.
• If you move someone, make sure Social Security, and all healthcare services (Medicare, prescription, other) are moved. One insurance sent warnings that they would stop her coverage in 4 days when they learned she moved, but it took 10 days to process a DPOA in order for me to talk to them about changing her coverage.
• Sign all documents as DPOA or agent or attorney in fact. Example signature => their name, by your name as DPOA.

Attach the DPOA to all accounts

• Financial (banks, credit cards, loans, pensions, stocks, …), Social Security, medicare, supplementals, doctor’s offices, home and car insurance, utility bills, etc.
• It can take companies multiple calls and weeks to process the DPOA.
• Yes, the DPOA is acceptable for all financial matters if it states that.
• Several groups will claim they need their own forms signed, but bottom line, your DPOA will be upheld in a court of law if it comes to it.
• You do not need to produce a letter of incapacitation.
• Do not assume the person you are talking to has the rules down correctly. Push back on what you know is inaccurate, ask for clarity and ask for someone else and/or a manager especially if you get mixed messages. And being willing to hold to wait for a manager.
• Understand all these institutions are dealing with security issues and unfortunately you will bare the brunt of their protection attempts.
• Once the DPOA is in place its easy to call and address matters as needed and help prevent something from being canceled (e.g. insurance).

Conservatorship | Guardian

• Recommend avoid this process unless DPOA is not an option. Basically get a DPOA setup and don’t do this.
• Court appoints responsible person/organization to care for the incapacitated person.
• May require regular check-ins in the state its established which can prevent or make relocation out of state or country difficult.
• Incapacitation may require 2 doctors to officially diagnose.

General Estate Matters

• Figure out where everything is and setup so you have access.
• Get all existing account user names and passwords (there is some legal sensitivity about accessing online accounts — get the passwords to make this easy on you).
• Setup all accounts that you can for online access. Note, Social Security has some scary language on their site about the individual who has social security is the only one who can access their account. Consult a lawyer if this concerns you but most DPOAs will grant you access.
• Apply 2FA (two factor authentication) at a minimum on all accounts.
• I spent 6 months making calls, faxing and sending mail for a couple hours almost every week day morning to get different matters resolved.
• When calling to discuss any individual’s account (before a DPOA is in place) typically you have to get the individual whose account it is to tell the rep who they are and that the rep can talk with you about their account. Its really not that secure of a process if you think about. Some people pretend to be the individual to simplify getting around this. This is not legal and I’m not saying do this, I’m only sharing what I heard.

Finances

• Split yourself from them in regards to finances to protect your finances. Make sure you pay for all their financial matters from their account.
• You can have a joint bank account, but make sure it’s only used for payments and deposits for them so it doesn’t become part of your assets on taxes.
• Automate bill payments when possible. When the shit hits the fan and you are busy juggling everything, it’s helpful that something doesn’t get canceled because you forgot to pay it because the statement went to the wrong place.
• Revocable Trust | Living Trust: Consider setting it up if trying to manage the care receiver’s assets. The care receiver can be the grantor and you the trustee. They are taxed for their assets, and you can be setup to manage them. This helps put authority and protection around assets as well as removes probate. This can be a way to put the trustee in complete control to manage the fund especially if the care receiver is being swindled out of money regularly.

Will

• Make sure one is setup.
• Templates for this exist online.
• Handwritten is still an option.
• Make sure to have it witnessed and notarized.

Medical

Medical Power of Attorney and Advance Directives

• Required for all medical decisions and one place DPOA does not cover.
• Pull templates from the Internet in your state and get this signed early.

Doctors

• Neurologist: Setup an appointment to get tested and see about treatment to slow progression.
• Memory Clinics: It can take months or a year to get into these specialized facilities and some require referrals. They may have research studies to help slow progression.
• Do not assume that the doctor can help guide you through how to handle caregiving (even those who are specialized with dementia patients).

Testing Types

• Mental status test including coordination assessment which is common with most doctors.
• Neuropsychological test that can take half a day or more with a specialist and is a number of questions to see how the person processes information. May include a follow-up call with people who know the person.
• Brain imaging (MRI or CT)
• Laboratory tests
• Genetic testing
• Not all of the above will happen and ask the doctor about them.

Meds

• If you suspect there is an issue seriously consider getting Aricept or something similar prescribed early to help slow down the progression.
• Get anti-anxiety meds prescribed as early as possible because dementia is known to be connected with increasing paranoia, anxiety and anger. Getting someone on medication to help them with this will also help them adapt to changes.

Organize

• Get all existing medical contact information and medical record copies (e.g. general practitioner, specialists, eye, dental.)
• Make a list of all surgeries, medications, allergies and anything else regularly asked for and keep it on you (digital or printed).
• Keep their medical card information on you for visits.
• If moving to a new city or state (esp. a senior living home) get a doctor’s appointment setup locally to see the person within the first week. You will need a contact for any medical needs that arise during the transition.

After Diagnosis

• For IRS and other legal matters, get a letter from your doctor that explicitly says the person has been incapacitated due to their illness. You may be able to write off the costs of care on the charge’s taxes.
• Get the doctor to fill out the DMV form for a handicap placard. Even if they can still walk at the time, go ahead and get it — every little bit helps with the journey you are on.
• Medicare covers home health checkups with a doctor’s order — ask for this.
• Medicare does not cover assisted living, memory care, board and home or in-home caregiving with. There is coverage for short periods in nursing homes and certain in-home health services based on meeting certain requirements. Review the rules based on your situation.
• At the Mild Cognitive Impairment stage, some doctors are obligated to report the condition to the DMV. Look into driving evaluation clinic assessments to help with keeping or taking away driving.

RELOCATION | MOVING

Everything costs more. Whatever you plan for, add at least 20% on top of it. And be ready for it to be more.

Wholistic Services

• There are individuals and organizations that can handle an estate sale, home sale and/or the move and transition. I recommend considering these service and would have if I had known of it before.
• Different outfits know each other and can sometimes coordinate with each other especially if you are moving between states.
• Next Steps for Seniors gave me some guidance on where to live, caregivers and movers.
• Lone Star Transitions went above and beyond helping me move my mom’s stuff in Houston to her place in SF.

Mail | Email

• Pay to permanently forward to a new address.
• Accept that your charge is not coming back from this and stop the mail.
• There are many out there sending mail to your charge that can easily take advantage of their vulnerable state. This is coming from both scams and legitimate sources. My mom gave away so much money to charity that sent her mailings almost weekly close to the end.
• I reviewed remote mailbox services but went with permanent forwarding because it seemed the less complicated and costly of the options.
• Turn off credit card offers permanently.
• Look into how to refuse and return to sender mail you do not want to receive for your charge (e.g. I had no interest in quilting or anything religious and my mom no longer had interest in the mail either).
• Consider monitoring and eventually taking over email because scams can easily come through that route.

Moving

• Cleaning out someone’s home is strange and emotionally draining.
• Depending on how big or how much the person collects, block off a number of days to get through it.
• Look for paperwork especially house and car titles, birth certificates, death certificates, wills, financials, instructions and genealogy docs.
• Call the home insurance group and update the status if the home is empty. This will probably increase coverage.
• Get help clearing out the house (especially if you are on your own).
• If you do an estate sale then set aside what you want and don’t throw anything else out.
• Have friends that have your best interests at heart go through the home you are dismantling with you to help decide what to keep and let go of.
• Support Network: Show up, bring food, give hugs, help caregivers hold on to things they don’t realize they will want to keep or let go of things they clearly do not need.

Estate Sales

• Give up the percentage 30–40% to an estate sale agent because it will be worth the time you free up.
• Pick out specific items you want to put with your charge in their new home. I set aside pictures and other memorabilia that ranged across all my mom’s interests, and I knew would resonate good thoughts.
• I spent time taking in what she focused on the most in the house and had her friends weigh in on what to keep for her memories.
• If your charge was a collector consider keeping key items out of the collection for her/him in the facility. There is usually limited space.

Selling the House

• If you need to move the person you are caring for, assess if its financially beneficial to keep the home.
• Even if you are strongly attached to the memories of the place, take the emotional attachment out of the decision as best you can and focus on what will be best for you and your charge to make sure s/he receives the care s/he needs and you can free yourself up to focus on her/him.
• Try to get the house listed before emptying it. Taxes and insurance increase when its empty, and you lose any tax credits for someone who is elderly when moved.

Realtor:

• Find one you feel confident with, has a track record, solid online presence and is detail oriented. Get references and recommendations and interview them.
• Find someone who has worked with families in similar situations.
• Make sure they are easy to get in touch with and responsive.
• Make sure the title company will allow the sale with the paperwork you have before signing with the realtor.
• Make sure the realtor gets the DPOA cleared with the title company before you accept an offer.
• Make sure the survey is done early in the process.
• Make sure the title company that is used does not have a history of losing the original DPOA in the mail when they return it to you. Yes, that happened. Yes, they decided to put it in regular mail back to me without any tracking. Yes… that happened.

Taking charge of someone’s life is complex. If there is a simple solution go with it even if it’s not ideal. It never will be ideal, but keep it as simple as possible to get through this.